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This meta-analysis of RCTs aimed to determine whether replacing face-to-face hospital care with telemedicine deteriorates psychosocial outcomes of adult cancer patients, in terms of quality of life (QoL), anxiety, distress, and depression. RCTs on interventions aimed at improving patient psychosocial outcomes were excluded. MEDLINE, EmBASE, and PsycInfo were searched on 13 May 2022 without language or date restrictions. In total, 1400 records were identified and 8 RCTs included (4434 subjects). Study methodological quality was moderate. Statistically significant improvements were observed in favor of the intervention for QoL (SMD = 0.22, 95% CI 0.01 to 0.43, p = 0.04), anxiety (SMD = −0.17, 95% CI −0.30 to −0.04, p < 0.01), and global distress (SMD = −0.38, 95% CI −0.51 to −0.25, p < 0.01). A meta-analysis on depression could not be performed. In subgroup analyses, the intervention appeared to be more beneficial for patients receiving active treatment vs. follow-up, for “other cancer types” vs. breast cancer, and for “other modes of administration” vs. telephone. Given the many potential advantages of being assisted at home, telemedicine appears to be a viable option in oncology. However, more research is necessary to determine the types of patients who may benefit the most from these alternative care modalities.

It has been shown that a reciprocal relationship between cancer patients and their family caregivers positively decreases distress in both. In this context we tried to explore the role of relationship reciprocity in the dyad members’ symptoms of fatigue and distress (anxiety and depression). Specifically, we aimed to assess the implications of relationship reciprocity testing the link between the various measurements of patient Quality of Life (QoL) and caregiver burden and the other measures of fatigue, distress, and relationship reciprocity. Moreover we aimed to examine the inter-relatedness of patients’ and caregivers’ relationship reciprocity with their own as well as fatigue and distress of the dyads. A convenience sample of 545 adult cancer patients and their caregivers from 15 cancer centers were examined using a cross-sectional design. Participants were administered dyadic measures (fatigue, distress, relationship reciprocity) and individual measures (patients’ QoL and caregivers’ burden). Patients’ QoL and caregivers’ Burden were associated with fatigue, distress and relationship reciprocity. The Actor-Partner Interdependence Model (APIM) revealed that each person’s relationship reciprocity was associated with their own distress and fatigue (actor effects); only caregivers’ relationship reciprocity was associated with patients’ fatigue and distress (partner effects). These findings suggest that the implication of the caregiving relationship for fatigue symptoms in both - patients and caregivers - appears worth of investigation.

Cancer patients are increasingly referred for cardiology evaluations. These patients differ from those routinely seen in cardiology clinics because of their psychological burden and because the therapies and cancer itself can cause cardiac symptoms. A humane approach is critical to managing these patients. Cardiologists may see patients who are newly diagnosed with cancer or are in various phases of treatment; these patients may or may not have preexisting cardiac disease, and may develop cardiotoxicity from chemoimmunotherapy or radiotherapy. Each of these situations presents unique communication challenges for cardiologists. Although some oncology centers provide training in communication skills for their personnel, including cardiologists, this training is not widely available to physicians in general hospitals or private practice. This article examines the psychological aspects of cardio-oncology. It offers practical suggestions on how to best communicate with cancer patients in different phases of oncology care, and discusses when professional psychological help is needed.

The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales.We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales.Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items.The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study.The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.

Key Points Question Does an implementation strategy integrating psychosocial care into cancer centers improve at least 1 of 2 domains (emotional or social function) of health-related quality of life? Findings This stepped-wedge cluster randomized clinical trial included 762 patients with cancer at high risk for reduced quality of life. Health-related quality of life score improved from baseline to 3 months among participants in the Humanization in Cancer Care Quality Improvement Strategy arm vs the usual care arm, showing a statistically significant difference for emotional function, but not for social function. Meaning This study suggests the use of an implementation strategy aiming to provide routine psychosocial care in cancer centers may be beneficial to patients; further investigation is required on factors that can maximize its effects., Importance Many patients with cancer who would benefit from psychosocial care do not receive it. Implementation strategies may favor the integration of psychosocial care into practice and improve patient outcomes. Objective To evaluate the effectiveness of the Humanization in Cancer Care (HuCare) Quality Improvement Strategy vs standard care as improvement of at least 1 of 2 domains (emotional or social function) of patient health-related quality of life at baseline and 3 months. A key secondary aim included investigation of the long-term effect. Design, Setting, and Participants HuCare2 was a multicenter, incomplete, stepped-wedge cluster randomized clinical trial, conducted from May 30, 2016, to August 28, 2019, in three 5-center clusters of cancer centers representative of hospital size and geographic location in Italy. The study was divided into 5 equally spaced epochs. Implementation sequence was defined by a blinded statistician; the nature of the intervention precluded blinding for clinical staff. Participants included consecutive adult outpatients with newly diagnosed cancer of any type and stage starting medical cancer treatment. Interventions The HuCare Quality Improvement Strategy comprised (1) clinician communication training, (2) on-site visits for context analysis and problem-solving, and (3) implementation of 6 evidence-based recommendations. Main Outcomes and Measures The primary outcome was the difference between the means of changes of individual scores in emotional or social functions of health-related quality of life detected at baseline and 3-month follow-up (within each group) and during the postintervention epoch compared with control periods (between groups). Long-term effect of the intervention (at 12 months) was assessed as a secondary outcome. Intention-to-treat analysis was used. Results A total of 762 patients (475 [62.3%] women) were enrolled (400 HuCare Quality Improvement Strategy and 362 usual care); mean (SD) age was 61.4 (13.1) years. The HuCare Quality Improvement Strategy significantly improved emotional function during treatment (odds ratio [OR], 1.13; 95% CI, 1.04-1.22; P = .008) but not social function (OR, 0.99; 95% CI, 0.89-1.09; P = .80). Effect on emotional function persisted at 12 months (OR, 1.05; 95% CI, 1.00-1.10; P = .04). Conclusions and Relevance In this trial, the HuCare Quality Improvement Strategy significantly improved the emotional function aspect of health-related quality of life during cancer treatment and at 12 months, indicating a change in clinician behavior and in ward organization. These findings support the need for strategies to introduce psychosocial care; however, more research is needed on factors that may maximize the effects. Trial Registration ClinicalTrials.gov Identifier: NCT03008993, This randomized clinical trial examines the use of psychosocial interventions in cancer treatment centers to improve patients’ health-related quality of life.

Simple Summary People with cancer often experience psychological and social needs, related to their disease and treatments, that can negatively impact quality of life. Various social interventions can be helpful but are not always offered to patients who would benefit from them. This guideline aims to help oncology professionals address the psychosocial aspects of their adult patients and of those who care for them. It was compiled by a multidisciplinary panel, including patients, using rigorous methodology. Topics include patient information and communication, screening and management of psychosocial needs, and caregiver support. In particular, evidence emphasizes that nurses play a central role in providing psychosocial care and information for cancer patients, and that Physician communication skills must be improved with specific evidence-based training. In addition, psychosocial needs must be promptly detected and managed, especially with appropriate non-pharmacological interventions. Abstract Psychosocial morbidity can have negative consequences for cancer patients, including maladaptive coping, poor treatment adherence, and lower quality of life. Evidence shows that psychosocial interventions can positively impact quality of life, as well as symptoms and side effects; however, they are not always offered to patients who might benefit from them. These guidelines were produced by a multidisciplinary panel of 16 experts, including patients, following GRADE methodology. The panel framed clinical questions and voted on outcomes to investigate. Studies identified by rigorous search strategies were assessed to rate certainty of evidence, and recommendations were formulated by the panel. Although the quality of the evidence found was generally moderate, interventions could be recommended aimed at improving patient information, communication with healthcare professionals and involvement in decision-making; detecting and managing patient psychosocial needs, particularly with non-pharmacological therapy; and supporting families of patients with advanced cancer. The role of nurses as providers of information and psychosocial care is stressed. Most recommended interventions do not appear to necessitate new services or infrastructures, and therefore do not require allocation of additional resources, but predominantly involve changes in clinical staff behavior and/or ward organization. Patients should be made aware of psychosocial care standards so that they can expect to receive them.

Background Despite the possible traumatic significance of cancer and of the incidence, prevalence, and survival of young women with breast cancer, these patients are underrepresented in multidimensional research. In the present survey, QoL and psychological distress were studied in a sample of young female breast cancer patients during the first year of their disease. More in detail, the study was firstly aimed to assess if QoL of 18–45 years old female breast cancer patients was different from QoL of women from the general population and if it changed over time. Secondly, it described the psychological distress and its change over time. Finally, it assessed if QoL registered 1 year post-surgery may be explained by QoL and/or psychological distress registered during the hospitalization. Methods One hundred six, consecutive 18–45 years old, female primary breast cancer patients undergoing anticancer surgery filled out the Short Form 36 Health Survey Questionnaire, the Hospital Anxiety and Depression Scale and a socio-demographic and clinical form during hospitalization to receive surgery (T0), and again at 12 months post-surgery (T1). Results At T0, participants showed a better physical functioning (p = 0.001) than the female normative sample, whereas their mental functioning was worse (p .001). In this time, mental functioning within our sample was weaker than physical functioning (p .001). Over time, physical functioning decreased (p .001), whereas mental functioning increased (p .001). Both at T0 and T1, anxiety was higher than depression (p .05). Both distress dimensions decreased over time (p .001). Nevertheless, at T0 the 25.5 and 26.4% of the sample were respectively possible and probable cases of anxiety, whereas the 17.9 and 9.4% were possible and probable cases of depression. At T1, the percentages were 17.9 and 18.9% for anxiety, and 8.5 and 6.6% for depression. In both considered times, a better QoL corresponded to less psychological distress. However, QoL and psychological distress assessed at T0 did not predict the QoL at T1. Conclusions This study documented as QoL and psychological distress may change during the first year after surgery for a primary breast cancer in young women; therefore, they should be monitored over time to detect and treat women with alarming levels on them.

Roberto Burro,1 Ugo Savardi,1 Maria Antonietta Annunziata,2 Paolo De Paoli,2 Ivana Bianchi3 1Department of Human Sciences, University of Verona, Verona, Italy; 2National Cancer Institute IRCCS ‘Centro di Riferimento Oncologico’ (CRO), Aviano, Italy; 3Department of Humanities (Section Philosophy and Human Sciences), University of Macerata, Macerata, Italy Background: An extensive body of literature has demonstrated that many patients who have been asked to participate in clinical trials do not fully understand the informed consent forms. A parallel independent study has demonstrated that opposites have a special status in human cognitive organization: they are common to all-natural languages and are intuitively and naturally understood and learnt.Purpose: The study investigates whether, and how, the use of opposites impacts on doctor–patient communication: does using the terms “small–large” to describe a nodule (ie, bipolar communication) rather than speaking in terms of centimeters (ie, unipolar communication) affect a patient’s understanding of the situation? And is it better to speak of “common–rare” side effects (ie, bipolar communication) instead of the number of people who have suffered from particular side effects (ie, unipolar communication)?Methods: Two questionnaires were created and used, one presenting the information in terms of opposites (ie, bipolar communication) and another using unipolar communication.Results: The participants’ perception of their situation (in terms of feeling healthy–ill, being at high–low risk, and their treatment requiring high–low commitment) varied in the two conditions. Moreover, self-reported levels of understanding and satisfaction with how the information was communicated were higher when opposites were used.Limitations: Since this is the first study that addresses the merits of using bipolar structures versus unipolar structures in doctor–patient communication, further work is needed to consolidate and expand on the results, involving not only simulated but also real diagnostic contexts.Conclusion: The encouraging results imply that further testing of the use of opposites in informed consent forms and in doctor–patient communication is strongly advisable. Keywords: opposites, bipolar, unipolar, informed consent, doctor–patient communication, understanding, satisfaction

Simple Summary The last 25 years have seen a significant increase in the number of lymphoma survivors. This review was carried out to examine the data currently available on the incidence of some of the consequences most reported by this population: peripheral neuropathy, cognitive impairment, fatigue, and anxiety and depression. This review also investigated any follow-up strategies or monitoring implemented. The 35 articles included in the final analysis provided an idea of what the incidence of these sequelae may be in long-term survivors of classical Hodgkin lymphoma and diffuse large B-cell lymphoma. Despite methodological limitations encountered in the literature search, the Authors attempted to summarize the available evidence and provide support to clinical practice. This systematic review represents the basis for designing future studies with a longitudinal trial design and examining more homogeneous populations to assess and monitor these dimensions over time in clinical practice and to respond promptly to the needs of lymphoma survivors. Abstract Background: The continuously improving treatment outcome for classical Hodgkin lymphoma (cHL) and diffuse large B-cell lymphoma (DLBCL) over the last 25 years has led to a high number of long-term survivors. The impact of treatment, however, can sometimes be dramatic and long-lasting. Focusing on peripheral neuropathy (PN), cognitive impairment, fatigue, anxiety, and depression, researchers of the Fondazione Italiana Linfomi conducted a systematic review of the literature to collect the available data on sequelae incidence as well as evidence of follow-up strategies for long-term cHL and DLBCL survivors. Methods: The review was carried out under the methodological supervision of the Istituto di Ricerche Farmacologiche “Mario Negri”, Milan, Italy. The literature search was conducted on three databases (MEDLINE, Embase, and the Cochrane Library) updated to November 2019. The selection process and data extraction were conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Results: A total of 2236 abstracts were screened, 247 full texts were analyzed, and 35 papers were included in the final analysis. Fatigue was the most extensively studied among neuropsychological sequelae, with a mean prevalence among cHL survivors of 10–43%. Although many of the papers showed an increased incidence of PN, cognitive impairment, and anxiety and depression in long-term cHL and DLBCL survivors, no definite conclusions can be drawn because of the methodological limitations of the analyzed studies. No data on monitoring and follow-up strategies of PN and other neuropsychological sequelae were highlighted. Conclusions: Based on our findings, future studies in this setting should include well-defined study populations and have a longitudinal trial design to assess the outcomes of interest over time, thus as to structure follow-up programs that can be translated into daily practice.

Body image is a psychological dimension of the experience of cancer, which varies along the clinical features of the disease itself and in its phases, as well as its effects in terms of functioning and quality of life. In 2012, Supportive Care in Cancer published a review addressing the relevance, application, and instruments of body image assessment for oncological settings. Since then, many research papers have been published on this topic and new questionnaires for assessing body image in oncology are now available. This contribution aims to offer both researchers and clinicians an updated review of body image assessment tools. We searched PubMed, Psychology and Behavioral Sciences Collection, and Scopus databases, which allowed us to identify pertinent papers, classified according to the body image tool to which they refer. We then extracted the characteristics and the psychometric properties from each study. From the 657 initial records, 23 papers met the selection criteria referring to 8 body image measurements. Although increasing in number and being the subject of a growing number of studies, these papers are still not exhaustive with respect to the verified psychometric properties. In particular, it is worth noting that their applicability to all types of cancer is limited and that a focus on women with breast cancer prevails. A complete validation (including a study of all types of validity and reliability) and an indication of the case results are not currently available for any of the eight instruments described. However, studies designed to apply body image assessment tools to patients other than those experiencing breast cancer as well to cultural contexts other than English-speaking countries, are increasing.

The Hospital Anxiety and Depression Scale (HADS) is a self-report questionnaire designed to screen anxious and depressive states in patients in non-psychiatric settings. In spite of its large use, no agreement exists in literature on HADS accuracy in case finding. The present research addresses the issue of HADS accuracy in cancer patients, comparing its two subscales (HADS-A and HADS-D) against tools not in use in psychiatry, which are able to detect prolonged negative emotional states. 2121 consecutive adult cancer inpatients were administered the HADS together with the State Anxiety subscale of State-Trait Anxiety Inventory and the Center for Epidemiologic Studies Scale on Depression. Receiver operating characteristic (ROC) curves were computed to identify a cut-off for anxious and depressive states in cancer patients. All indicators were computed together with their corresponding 95% confidence interval (95% CI). Data of 1628 and 1035 participants were used to assess the accuracy in case finding of HADS-A and HADS-D, respectively. According to the ROC analysis, the optimal cut-off was > 9 units for the HADS-A and > 7 units for the HADS-D. The area under the ROC curve was 0.90 for HADS-A (95% CI 0.88–0.91) and 0.84 for HADS-D (95% CI 0.81–0.86). This study suggested that risk scores of anxious and depressive states above specific HADS cut-offs are useful in identifying anxious and depressive states in cancer patients, and they may thus be applicable in clinical practice.

INTRODUCTION The well-being and quality of life (QoL) of long-term cancer survivors may be affected, both positively and negatively, by psychosocial factors related to the experience of being a cancer patient. We investigated whether, in long-term cancer survivors, the psychosocial impacts of cancer associate with socio-demographic-clinical variables; whether, within the positive and negative dimensions taken separately, some impacts are more intense than others; and whether these impacts explain QoL. METHODS Italian long-term cancer survivors (n = 500) completed the Impact of Cancer (IOC-V2) and Short Form 36 Health Survey (SF-36) questionnaires. RESULTS The IOC-V2 negative impact score associated with gender, education, occupational status and health issues, whereas no association was found between the positive impact score and socio-demographic-clinical variables. Of the positive impacts, Altruism/Empathy was the highest (p

6515 Background: Cancer patients (pts) often do not receive evidence-based psychosocial care. We evaluate the effects of an implementation strategy we previously demonstrated feasible, which includes communication skill training for all physicians and nurses; four support visits at the centers by an improvement team to assist staff in identifying obstacles, finding solutions, and strengthening motivation; screening for distress and social needs; individualized pts' education with a referring nurse; use of a question prompt list. Methods: Multicenter incomplete SWD-RCT with 3 clusters of 5 centers each. Consecutive outpatients requiring medical treatment and diagnosed in the previous 2 months were eligible. Primary endpoint: difference of at least one of the 2 domains of HRQoL emotional or social functions, at 3 months from baseline, in pts of the centers that implemented the HQIS vs standard of care (SoC). Secondary endpoints include: patient mood, long-term effect, overall HRQoL. Analyses were performed using a beta-binomial regression model. Results: 762 pts were enrolled. At baseline, 41% showed high anxiety (HADS-A>7), and 88% had at least one psychosocial need. 299 health professionals attended 3-day courses (84% of all clinical staff). 647 pts (85%) were available for analysis. The 315 pts who received HQIS exhibited better quality of life for the emotional domain than those assigned to SOC (OR=1.115, p=0.016). Pts who showed the greatest improvement were the older (OR=1.003, p=0.035), had lower anxiety basal levels (OR=0.853, p

Roberto Burro,1 Ugo Savardi,1 Maria Antonietta Annunziata,2 Paolo De Paoli,2 Ivana Bianchi3 1Department of Human Sciences, University of Verona, 37129 Verona, Italy; 2National Cancer Institute IRCCS “Centro di Riferimento Oncologico” (CRO), 33080 Aviano (PN), Italy; 3Department of Humanities (section Philosophy and Human Sciences), University of Macerata, 62100 Macerata, Italy Background: Healthcare staff should be aware of the importance that patients may attach to the words that are used to convey information. This is relevant in terms of the patients’ understanding. Modeling how people understand the information conveyed in a medical context may help health practitioners to better appreciate the patients’ approach. Purpose: 1) Analyze the participants’ self-reported perception of the type of information provided in an oncological scenario in terms of three dimensions: impairment to their health, risks associated with the disease itself and commitment required to undergo the treatment; and 2) show the benefits of using Rasch scaling for the analysis of the data. Starting from a survey, Rasch scaling produces a unidimensional logit-interval scale relating to the extent to which each item conveys a latent dimension. These were related to structure, in particular concerning communication by means of opposite vs. unipolar language. Subjects and methods: The participants rated 82 items of information in a questionnaire regarding their perception of impairment to their health (H) and the risks (R) and commitment relating to the treatment prescribed (T). Results: The scaling produced an item bank for healthcare staff to consult in order to estimate the importance the recipient would be likely to attach to the vocabulary used and the likely impact of the information in terms of the patient’s condition. Furthermore, the use of opposites was generally associated with a clearer impression of whether the information given was generally only very negative or slightly negative, whereas ‘neutral’ information was often perceived as being very negative. Actual findings: Is possible to estimate people’s understanding more precisely (in terms of H, R and T) which can help healthcare practitioners to modulate the way they convey information. Limitations: The participants in the study were healthy volunteers and the context was simulated. Keywords: Rasch model, simulated oncological scenario, perceived severity of impairment to health, perception of risk, perceived commitment to the treatment, opposites

The purpose of this chapter is to provide a comprehensive overview of pertinent issues and considerations when assessing body image in an oncology setting. It argues for a multifaceted assessment of body image and delineates key aspects of body image relevant to the oncology setting. Attention is given to reviewing disease-specific body image instruments developed for cancer patients, broad-based quality of life instruments used in oncology research that have a body image component, and general body image instruments that have relevance for cancer. Fundamental elements of conducting a clinical assessment of body image concerns, including key content areas for a clinical interview are also discussed. Case examples and practical suggestions are offered throughout the chapter to enhance applications for clinical practice.

Background The Body Image Scale (BIS) is a 10-item mono-factorial scale, designed to capture distress and symptoms related to body image in cancer patients. This paper describes the conversion and psychometric evaluation of an Italian BIS version. Methods After the back-translation procedure, the Italian version of the BIS, together with the Hospital Anxiety and Depression Scale and the Short Form 36 Health Survey Questionnaire, have been administered to a sample of Italian adult females, surgically treated for a breast cancer at least one year before. Results Data on 109 participants were analyzed. The response rate was 92.5%. Response prevalence was adequate for 9 out of 10 items. Principal component analysis showed a one-factor structure. Internal consistency (Cronbach’s alpha =0.924) was good. The BIS correlated with the theoretically pertinent subscales of the other administered tools and was able to discriminate participants (discriminant validity) according to the undertaken surgical treatment (p = 0.031). Conclusions This study supports the valid and reliable use also of the Italian version of the BIS. Electronic supplementary material The online version of this article (10.1186/s12885-018-5143-6) contains supplementary material, which is available to authorized users.

Since long-term cancer survivorship is a reality for an increasing number of people, understanding their cognitive functioning is useful for both research and clinical purposes. This study described the cognitive functioning of Italian long-term cancer survivors, using both an objective standardized battery and a self-report questionnaire. A total of 136 Italian adults 5+ years free from cancer and its treatments were administered the Esame Neuropsicologico Breve, the Self-Assessment Scale of Cognitive Functioning, and assessments of other psychological dimensions. A total amount of 15% of the sample showed impaired performance on 2+ of the assessed cognitive functions, and 32% had 1+ impaired function. The subjective perception of their cognitive functioning was worse in the present sample, compared to the normative data (p 0.001). Cognitive functioning, objectively and subjectively measured were significantly correlated (p = 0.006). The number of tests scored outside the normal range correlated positively with depression (p = 0.042) and negatively with both the estimated total IQ (p 0.001) and with estimated performance IQ (p = 0.001). Self-perceived cognitive functioning correlated positively (p 0.001) with depression, anxiety, and fatigue. These data document how cognitive difficulties may remain for a long time in cancer patients, who are likely to continue to subjectively perceive themselves as impaired, although sometimes to a greater extent than objective impairment.

This study examines the development and feasibility of a quality improvement strategy for the translation of evidence-based psychosocial care into clinical practice. The project involved all staff (oncologists, psychologists, and nurses) of the participating centers. Recommendations concerned: improvement of clinician communication skills; use of a patient question prompt list; assignment of a specialist nurse to each patient; screening for psychological distress and social needs; opportunity to attend a Point of Information and Support. The implementation strategy hinged on context analysis and problem solving. Four to six visits were held in each center by the project team to assist staff in identifying obstacles, finding solutions, and strengthening motivation. The primary variable was the adherence percentage to the recommendations (proportion of subjects receiving each intervention). The number of centers that failed to reach the objective was also reported (adherence percentage

In Italy, educational programs for cancer patients are currently provided by the national government, scientific societies, and patient advocate organizations. Several gaps limit their effectiveness, including the lack of coordinated efforts, poor involvement of patient feedback in the planning of programs, as well as a lack of resources on innovative cancer-related topics. This process is parallel to a strong shift in the attitude of patients towards health in general and taking charge of their own health conditions in particular. The National Cancer Institute in the USA and the Organization of European Cancer Institutes encourage comprehensive cancer centers in providing educational programs conceived to overcome these gaps. The goal of this paper is to identify and describe the key elements necessary to develop a global patient education program and provide recommendations for strategies with practical examples for implementation in the daily activities of cancer institutes. A multidisciplinary committee was established for patient education, including patient representatives as equal partners, to define, implement, verify, and evaluate the fundamental steps for establishing a comprehensive education program. Six essential topics were identified for the program: appropriate communication of cancer epidemiology, clinical trial information, new therapeutic technologies, support in the use of medicines, psycho-oncological interventions, age-personalized approaches, and training programs for healthcare providers. Integration of these topics along with patient feedback is the key to a successful model for educational programs. An integrated educational program can transform a comprehensive cancer center to an institution that provides research and care for and with patients.

Since long-term survivorship is now a reality for an increasingly number of people with a history of cancer, understanding their quality of life (QoL) can inform health care policy as well as help supporting individual patients. This study was aimed to quantify QoL of this specific population in comparison with data provided for both the general population and cancer patients and to assess QoL association with several sociodemographic, clinical, and psychological variables. Three hundred fourteen Italian long-term cancer survivors (people who have been free from cancer and cancer treatments for at least 5 years) completed a battery of questionnaires including the SF12 for QoL assessment. Both physical and mental functioning were higher than those among Italian cancer patients but lower than those of the Italian general population (p

Background BRCA1 and BRCA2 mutations are associated with a higher risk of breast and ovarian tumors. This study evaluated the emotional states of women 1 month after having received the results of the genetic test and assessed eventual associations with the type of outcome, personal/familiar disease history and major socio-demographic variables. Methods The study, an observational retrospective one, involved 91 women, evaluated 1 month after receiving their results. Patients were administered the Hospital Anxiety and Depression Scale, the Profile of Mood States and emotional Thermometers. Results Anxiety was significantly higher than depression (p

Background The term “humanization” indicates the process by which people try to make something more human and civilized, more in line with what is believed to be the human nature. The humanization of care is an important and not yet a well-defined issue which includes a wide range of aspects related to the approach to the patient and care modalities. In pediatrics, the humanization concept is even vaguer due to the dual involvement of both the child and his/her family and by the existence of multiple proposed models. Objective The present study aims to analyze the main existing humanization models regarding pediatric care, and the tools for assessing its grade. Results The main Humanization care programs have been elaborated and developed both in America (Brazil, USA) and Europe. The North American and European models specifically concern pediatric care, while the model developed in Brazil is part of a broader program aimed at all age groups. The first emphasis is on the importance of the family in child care, the second emphasis is on the child’s right to be a leader, to be heard and to be able to express its opinion on the program’s own care. Several tools have been created and used to evaluate humanization of care programs and related aspects. None, however, had been mutually compared. Conclusions The major models of humanization care and the related assessment tools here reviewed highlight the urgent need for a more unifying approach, which may help in realizing health care programs closer to the young patient’s and his/her family needs. Electronic supplementary material The online version of this article (10.1186/s13052-017-0394-4) contains supplementary material, which is available to authorized users.

Understanding the quality of life (QoL) of cancer survivors is relevant to both clinical practice and health care policy. The current study compared the QoL profile in this specific population with that of a normative sample for the general population, as well as with those of both healthy and oncological patients normative sub-samples. In addition, associations between the obtained QoL profile and the main socio-demographic and clinical characteristics of the sample were examined. Three hundred and ninety-two adult long-term cancer survivors (i.e., people 5 + years from their cancer diagnosis who were free from it and its treatments) were enrolled during follow-up visits and compiled the Short Form 36 Health Survey. In comparison with the normative data for the adult general population, the present sample showed lower scores in Physical functioning, Role-physical limitation, and Role-emotional limitations (all differences were both statistically and clinically significant); the difference in Vitality was only statistically significant. In all eight SF-36 scales, scores of the present sample were clinically and statistically lower than those of the normative healthy subsample, whereas they were statistically and clinically higher than those of normative subsample which had experienced cancer, except for Role-physical limitation. The QoL profile was associated with gender (p = 0.002), age (p = 0.001), education (p

Understanding the quality of life (QoL) of long-term cancer survivors is relevant to daily clinical practice as well as to healthcare policy. This study assessed QoL of Italian survivors and tested the association between QoL and the main clinical and socio-demographic sample’s characteristics. Two hundred and sixty-five Italian adult long-term cancer survivors (people free from cancer and its treatments for at least 5 years) were administered the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, the Impact of Cancer, and the Short Form 36 questionnaires obtaining three different QoL profiles—cancer-specific, survivorship-specific, and generic. In both cancer-specific and generic QoL profiles, participants reported a lower general health and a higher social functioning than normative samples; in addition, they reported low emotional functioning and vitality, respectively, in the former and latter profile. In the survivorship-specific profile, participants scored higher on personal growth and altruism (p

The human being results from a co-constructed narration, which happens within background meanings and cultural frameworks, and in turn provide meanings to assign to each human experience. These meanings precede individual lives, they are their implicit premises, and in that way, they allow us to find significant answers to our experiences and to build a plot to our own story—placing each experience in a precise place that fits within our past and future history. When the experience is extra-ordinary like having a cancer, the need for a meaning is stronger and more difficult: this difficulty is expressed by the psychological suffering. When patients appeal to a psychologist/psychotherapist, they are impelled by the suffering induced in the perception of a break in their narrative and the psychotherapeutic work is a work on the narratives, aimed to help patients in re-writing their own stories from different perspectives. This re-writing will be completely adaptive only when able to produce new frameworks of meaning through the change of implicit premises.

The Impact of Cancer Scale (IOC) is a self-assessment tool designed to capture the unique and multidimensional aspects of the quality of life of long-term cancer survivors. This paper describes the adaptation and psychometric evaluation of its Italian version.After the adaptation (i.e., removal of nonpertinent items and back-translation procedure), the Italian version of IOC has been administered to a sample of Italian long-term cancer survivors (people free from cancer and its treatments for at least 5 years) together with the Short Form 36 Health Survey Questionnaire, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, and the Post-Traumatic Growth Inventory.Data on 304 participants were analyzed. Exploratory factor analysis revealed a three-factor structure composed of Uncertainty/Worry about HealthFuture (13 items), Personal GrowthAltruism (14 items), and DissatisfactionLife Interferences (10 items). Internal consistency (Cronbach's alpha,0.77) and temporal stability (Spearman's rho,0.70) were good for all three factors. The obtained three factors correlated with the theoretically pertinent subscales of the other administered tools. To facilitate cross-cultural comparisons, reliability and convergent/divergent validity data for the eight-factor IOC structure already described in literature (Impact of Cancer Version 2) have been also provided.This study supports the use of the IOC in Italy as a trifactorial instrument that is able to isolate aspects characteristic of the condition of long-term cancer survivorship. However, subsequent studies are needed to confirm these findings as well as shed more light on the validity of the IOC construct and its cultural variability.

The "Cognitive Functioning Self-Assessment Scale" (CFSS) is a questionnaire specifically developed for the self-reporting of cognitive functioning in non-neurologic settings. A previous published study had showed its good reading comprehension and face validity, defining it as monofactorial and reliable. This paper provides further psychometric data and norms derived on a larger sample from the general population. Our work is divided into two studies. In Study 1, 194 adult patients in a General Practitioner study (27.8% retested after 2 weeks) have filled-in the CFSS together with the CES-D, the State Anxiety subscale of the STAI, and a clinical and socio-demographic data form. The Cronbach's alpha of the CFSS was 0.878; the temporal stability was 0.794; in addition, CFSS showed substantial and moderate associations respectively with depression and state anxiety measures. In Study 2, CFSS data on 476 participants have been considered. CFSS score was associated to age (p 0.01) and education (p 0.01). In addition, CFSS descriptive statistics according to age and education levels were provided. In conclusion, although further research is surely necessary to refine the CFSS, the herein presented data together with the already published results, confirm the validity and reliability of this tool.

Purpose The purpose of this study was to evaluate patientcentered outcomes of decompressive percutaneous endoscopic gastrostomy (dPEG) in patients with malignant bowel obstruction due to advanced gynecological and gastroenteric malignancies. Methods This is a prospective analysis of 158 consecutive patients with small-bowel obstruction from advanced gynecological and gastroenteric cancer who underwent PEG or percutaneous endoscopic jejunostomy (PEJ) positioning for decompressive purposes from 2002 to 2012. All of them had previous abdominal surgery and were unfit for any other surgical procedures. Symptom relief, procedural complications, and post dPEG palliation were assessed. Global Quality of Life (QoL) was evaluated in the last 2 years (25 consecutive patients) before and 7 days after dPEG placement using the Symptom Distress Scale (SDS). Results dPEG was successfully performed in 142 out of 158 patients (89.8 %). Failure of tube placement occurred in 16 patients (10.1 %). In 8/142 (5.6 %) patients, dPEG was guided by abdominal ultrasound. In 3/142 patients, dPEG was CT-guided. In 14 (9.8 %) patients, who had previously undergone total or subtotal gastrectomy, decompressive percutaneous endoscopic jejunostomy (dPEJ) was performed. In 1/14 patients, dPEJ was CT-guided. Out of 142 patients, 110 (77.4 %) experienced relief from nausea and vomiting 2d ays after PEG. Out of 142 patients, 116 (81.6 %) were discharged. The median postoperative hospital stay was 9 days (range 3–60). Peristomal infection (14 %) and intermittent obstruction (8.4 %) were the most frequent complications associated with PEG. Median survival time was 57 days (range 4–472) after PEG placement. Twenty-five patients had QoL properly evaluated with SDS score before and 7 days after dPEG. Sixteen patients (64 %) out of 25 exhibited an improvement of QoL (p

Body image is the sum of physical, cognitive, emotional, and relational elements that, when integrated, allow the development of a whole, healthy self-identity. Even though body image is normally studied in relation to eating disorders, it can also be influenced by other pathologies, including cancer. In oncology, an effective body image assessment is fundamental. The physical effects of cancer and cancer treatments are important and frequently irreversible also on a functional and emotional level; however, only few surveys have investigated body image in this peculiar context.An extensive literature review was carried out in PubMed and PsycINFO. We considered articles published from 1990 to 2010.Two hundred sixty-three papers matched the search criteria. Assessment methodologies included clinical interviews, self-report measures, questionnaires, symptom check lists, and graphic tests and projective techniques. After excluding the instruments that referred to eating disorders, validated only for adolescents, and/or projective and graphic tests, we found 81 articles with six questionnaires specifically dedicated to body image assessment in oncology.From our systematic review, we could identify six instruments specifically designed for assessing body image in the oncological area. In this paper, we discuss their general characteristics, psychometrics properties and the clinical implications, and body image relevance on the quality of life in cancer patients.

Background Despite its popularity, not a definitive word has yet been said about the latent structure of the Hospital Anxiety and Depression Scale (HADS). The present work is a contribution to this issue: statistically identifying the best tool structure helps in understanding which constructs the tool actually detects. Participants and methods Five hundred and twelve Italian consecutive hospitalized cancer patients completed the HADS together with a form for the collection of personal and clinical data. Two confirmatory factor analyses (CFAs) were carried out to test the validity of both two- and one-factor models, whereas qualitative and quantitative (i.e. Akaike information criterion) indices were used to assess which model among them would fit better with the observed data. Finally, two multigroup CFAs were carried out to test the factorial invariance across gender and disease phase (diagnostic, therapeutic) of the best-fitting model. Results Although both considered models provide a good fit to the observed data, the two-factor model is more adequate; it is invariant across gender and disease phase. Conclusions The present study gives evidence for using HADS to detect anxious and depressive states separately as originally suggested by its authors. Given that this work involved only Italian cancer inpatients, replications in different cultural/national contexts are recommended.

We report here an encounter between an oncologist and a young woman who has just received a diagnosis of breast cancer. We compare two possible approaches, presenting both the disease-centred model dialogue and the patient-centred model dialogue. The operative protocols of both techniques are explained and commented with reference to the literature.

Background and object: An accurate assessment of patients' needs is a core point in improving treatment adherence, satisfaction, and quality of life of care receivers. The Needs Evaluation Questionnaire (NEQ) is a practical and short instrument designed to record hospitalized patients' necessities. The present paper is a contribution to its factorial definition, useful in enhancing the understanding of NEQ psychometric properties and in supporting its use in research as well as in current practice. Method: Six hundred consecutive hospitalized cancer patients completed the NEQ together with a form for the collection of personal identification and clinical data. The initial sample was randomly split into two subsamples, and we then conducted: (1) an exploratory factor analysis (EFA) on Subsample 1; (2) a confirmatory factor analysis (CFA) of the factor structure resulting from EFA on Subsample 2; (3) a comparison between the factor structure resulting from CFA and a unidimensional factor solution. Results and conclusions: EFA revealed the presence of five factors (i.e. informative needs, needs related to assistance/care, relational needs, needs for psychoemotional support, and material needs) explaining a total of 50.5% of the variance. CFA confirmed the validity of the correlated five-factor solution emerging from EFA, demonstrating how the theoretical model provided a good fit to the observed data. Finally, we demonstrated that the five-factor solution was more appropriate in the reconstruction of the observed data than the unidimensional factor solution. According to the present data and despite the limitations raised, using NEQ as a five-factor questionnaire is functional and recommendable. Copyright © 2008 John Wiley & Sons, Ltd.

Since long-term survivorship is now a reality for an increasing number of people with cancer, understanding their mood states (i.e., transient subjective emotional states) can inform health-care policy as well as help support individual patients. This study described the mood states of Italian long-term cancer survivors, compared them with normative data, and tested their association with the main clinical and socio-demographic sample’s characteristics. One hundred and fifty-eight Italian adults free from cancer and its treatments for at least 5 years were administered the Profile of Mood States (POMS) and two ad hoc 0–10-point visual-analogue scales on personal health-related worry and risk perception for a personal relapse, respectively. In comparison with the Italian normative sample, the current sample displayed a higher score in Vigor-Activity (p = 0.003) and a lower score in Confusion-Bewilderment (p = 0.008). In Tension-Anxiety, Confusion-Bewilderment, Depression-Dejection, Anger-Hostility, Fatigue-Inertia, and Vigor-Activity, 14.6, 15.9, 17.1, 17.8, 19.7, and 13.3 % of the sample, respectively, displayed meaningful scores (i.e., scores above or below 1 standard deviation from the normative mean score). The mood state profile POMS-provided was associated with gender (p = 0.002), occupational status (p = 0.003), reported health issues (p

TO THE EDITOR: The interesting work by Virgo et al highlights the importance and at the same time the problematic of long-term follow-up for cancer survivors. The limited experience and low interest of the general practitioner on the management of cancer patients in long-term care are major barriers to the transferability of long-term patients with cancer to their general physician, although is clear that the increasing number of cancer survivors are a limitation for the care from medical oncologist. As admitted by Virgo et al, one limitation of the study is that this was based mainly on breast and colon cancer survivors while the difference in patients with lymphoma could have been more evident. In our view, the problem not yet studied of the transfer of the patients from medical oncologist/hematologist to general practitioner is the willingness of patients with cancer to do that. In fact, the patients with cancer are usually reluctant to abandon the primary medical oncologist and to be transferred to their general practitioners. It should be important to have the point of view of organizations for patients with cancer on this matter. In our view, it would be much better, although more costly, to develop a cancer survivors clinic within the department of oncology of the major cancer hospitals with medical oncologist and psychologist working together, and transfer these patients to these new structures to give the best supportive care either medical and psychological to patients with cancer, also in association with other specialists, in particular cardiologists. In fact, it should not be forgotten that cardiovascular adverse effects are becoming increasingly important in long-term care of cancer survivors, in particular patients with breast cancer and lymphoma that may have received anthracyclines and/or radiotherapy. In our cancer center, the cancer clinic for long-term survivors is active with combined work of medical oncologist/hematologist and psychologist.